When I started having nocturnal seizures, I never worried about having a seizure at work because they were only happening in my sleep. When I was first diagnosed, I was in the hospital for a couple days to figure out what why I was having seizures. The company I was working for at the time, knew what was going on and they were VERY supportive. I felt comfortable talking to them about the seizures, my doctors, medications, etc. I became really good friends with my coworkers. After I left the company, they still kept in touch with me and I updated them about my health. When I left the company and joined a new company, I did not want to tell them I had epilepsy. I kind of felt embarrassed, but also I wanted to start fresh and keep my health condition private. When my nocturnal seizures turned into day time (partial complex seizures), I could have a seizure anytime and anywhere.
On the 4th day of my new job, I was going to an event with one with my new coworkers. It was the first time I met her and we were taking a train from San Diego to Anaheim. When we get to the event, I met another co-worker on my team and he was also taking the train back with us. Both of them – super cool. On the way back to San Diego, my coworker offered me a piece of beef jerky, I took one bite and felt an aura. An “aura” is so hard to explain. It is kinda like a deja vu. I feel this sense of fear/anxiety and before you know it, the seizure started so fast. My coworker asked “are you ok” “she is not breathing!”. Everyone rushes to me, trying to help. As soon as I got out of it, I yelled “I am ok, I have epilepsy!”. A passenger who was a doctor asked me if I should stop the train. I said “there was no need”. I looked at my coworkers and say “so ya I have epilepsy…”
The next day at work, my manager says if I need someone to talk to. I guess someone at the event passed away with a heart attack. I didn’t know about this, I thought she was talking about my seizure. So I told her what happened on the train, she was empathetic. On my 4th day of work, everyone new that I had epilepsy.
Everyone asks if people with epilepsy are supposed to tell your manager/coworkers that you have seizures. Honestly, it is personal preference. I really had no choice to decide. My seizures decided to tell them. I’m getting more comfortable in telling people I have epilepsy. Once you educate them about it, you will feel better.